In July 2009, our beautiful son Adam was diagnosed with high-risk neuroblastoma, an aggressive children's cancer. Despite four years of treatment in the UK, Germany, and America, Adam sadly passed away on 11th July 2013 at home with his family. Visit Adam's Appeal at http://adamsappeal.org.

Wednesday, 7 April 2010

What to do next...?

So Adam started chemotherapy again today. The 6th and final cycle of TVD. He's had his 5 or 6 days of being reasonably well and now it's time to hit the skids again. Tests at the start of May will determine what happens next. It's not quite now or never but if Adam's bone marrow is still infected and his MIBG scan still not clear then we definitely move off standard protocol. I'm not at all hopeful that the tests will give us the results we are hoping for. Perhaps it's that the more times I sit in the consulting room and hear the words 'bone marrow still infected and MIBG still shows areas of disease', the more I expect it the next time too.

Assuming my fears are realized and the test results remain the same our options seem to become quite limited. We can try more chemotherapy drugs. Temozolomide and Irinotecan are two that have been mentioned. These are well established cancer drugs but are relatively new to paediatric cancer. Clinical trials have shown sufficient responses in Neuroblastoma patients to justify their continued usage. We could harvest stem cells and then look to do MIBG internal radiation therapy. This is similar to the MIBG scans of which Adam will have had 5 after the next one in May. However the dose of the radioactive agent is far far higher in MIBG therapy. Enough not only to seek out cancer cells but to attack and destroy them as well. There are only two places in the UK where it can be carried out - RMH and UCLH. They have the special lead-lined isolation rooms that are required for this treatment. I probably don't need to say any more than that about how pleasant it is.

At this juncture it's probably worth making the point that if Adam's tests do come back clear it doesn't actually mean he is free from disease. Bone marrow is only taken from two sites and a negative result may simply mean that there is only small amounts of dispersed NB cells and they haven't been picked up. But we all know that the only good number of cancer cells to have is zero. Two of the main areas of Neuroblastoma research are disease detection and treatment of residual disease. More accurate detection techniques will enable treatment to become more targeted and more timely. But that will come too late to help Adam. Treating residual disease is what we are raising money for... but we've got to get to only residual disease left first.

One of the possibilities we are faced with is to harvest Adam's stem cells whilst he still has disease in his bone marrow. I find this prospect horrifying. Truly I do. You harvest Adam's stem cells and take some NB cells along with them. Then you pump one of the most toxic combinations of drugs known to man into him wiping out his immune system and leaving him frail and vulnerable. Then you put the stem cells back. And in the process you put the cancer cells back too - and tell them to have a good time presumably? I believe they do irradiate the cells outside the body before they are stored, but I don't think this has ever been proven to be effective.

You might be forgiven for thinking that I know what I'm talking about btw. Of course I don't really I'm just a freaked out parent who sees most things over-simplistically.

The reason for harvesting stem cells even if they are likely to be infected is that having some stem cells to play with is better than having no stem cells at all. You have MIBG therapy and you completely kill off the bone marrow. You have no stems cells and you can't grow the bone marrow back again. Additionally I've been told the more chemotherapy you have the harder it is to harvest stem cells. Although on this last point I've also heard anecdotal evidence to the contrary.

What I know is we have to get Adam to remission but we've got to do it in such a way that we maximize the chances of avoiding relapse. It's why I'm fixated on immunotherapy. And why I've even started to think that Adam might have a better chance by going to America sooner rather than later. I don't want to get to the point where Adam's treatment is dictated by what there is left to try. Maybe it will come to that - it's part of getting beaten by this disease. But just maybe there are better alternatives out there at places like Memorial Sloan Kettering. I suddenly feel like I have to find out, and find out now. I know their approach is different and based much more heavily on immunotherapy rather than chemotherapy. Well hey, chemotherapy hasn't really worked all that well so maybe it's time to give something else a shot?

All things considered I have a lot of stuff going on up top at the moment.

My next entry is going to be more frothy and lightweight. Promise. I'm going to write about all the nice things Adam did over Easter and earlier this week. I'm absolutely determined, I want you to hear about them. I meant to do it today but my internal musings got the better of me.

1 comment:

Nick, Ive never read a blog before!!! All new to me but thank you for explaining everything about Adams treatment. All I can say is I am doing what I can to raise money but if there is anything more I can do to help let me know. Daniel very much enjoyed his visit to see Adam. Adam does have lots of energy and mischief too.They had a lovely time.